To my friends with “regular” or “normal” (AKA: neurotypical) kids: as a parent of a child with special needs, and as your friend, there are some things I would like you to hear that are hard for me to say out loud:
I’m so incredibly tired.
We’re all tired. I know we’re long overdue to hang out, but life with a child who needs so much extra attention is utterly exhausting. When I get a random free moment to myself, I usually just want to turn my phone off and take a nap.
I promise I’m not pulling a “mom card” to get out of things.
My kid has a lot of appointments and needs right now. Later on in life, I hope there are fewer, but I can’t turn down any necessary appointments or leave her in complete meltdown mode with a wide-eyed babysitter because of your wine tasting or bunco night.
Speaking of, suggesting that I “just get a babysitter” is a lot harder than people think.
Not many people are comfortable with changing an older child’s diaper, and it takes time to introduce someone new to her. My list of potential sitters is pretty short, and I always feel like we’re wearing out the grandmas. The babysitters we do have also have lives of their own, so I either need pretty advanced notice or a kid-friendly event.
Birthday parties and similar celebrations can sometimes be hard for us to attend.
I want to celebrate your child’s birthday, but some birthday parties (i.e. movie theaters, laser tag, tea parties with real china…OMG) are not ideal for a sensory-sensitive child or a child with mobility issues. Please don’t be upset if we have to leave early because of an impending meltdown, or we decline the invite. I will always celebrate with you, my wonderful friend, even when we can’t be there.
I want my child to be put in positions of risk – she needs the dignity of failure.
Please don’t worry about making elaborate exceptions for her or making things that much easier for her to participate. Inclusion comes with some of the hard stuff, too.
My child is loud, has a hard time communicating, and can exhibit behavior that is hard to understand.
But, you will never get comfortable with our normal unless you interact with us within that normal. It may be hard for us to come over to your house for a play date, but that doesn’t mean we don’t want a play date. Your house has beautiful, breakable things everywhere, and it’s easier to stay home than spend the whole time trying to keep your house from being wrecked by my curious wonder of a child. Please don’t be afraid to ask what environment would be best for a meet up. I want you to ask, because having to lay out ground rules every. single. time. we want to interact feels needy and high-maintenance. A simple text or call saying “Let’s just meet at the playground by your house” or “What’s her favorite restaurant? We can totally go there this time” would mean the world to us.
Your kids are accomplishing BIG milestones, and I want to hear about them!
I know my daughter is 6 years old and not even close to being potty-trained yet, but I still want to hear about your kid’s first accident-free trip to Target at only 3 years old, or his first home run, or that she consistently sleeps 8 straight hours at only 18 months old. You don’t have to be afraid to brag about something your kid can do that my kid can’t. It’s okay. We know we’re behind, and your family’s success is in no way a direct rebuttal to our unusual normal. Will I be a little jealous? Probably. Will I be over-the-moon happy for you? ABSOLUTELY, MAMA!
I crowdsource a LOT.
Mealtime advice, development questions, babysitting frustrations, therapy recommendations – anything and everything. I’m sorry that I don’t ask you for parenting advice as much as I’d like, but most of the time, we direct those questions to parents in similar situations. (Confession: I crowdsourced some of the points in this article – thanks, rockstar parents and friends!)
This life is incredibly isolating.
I miss you, my friend, and sometimes, I miss the me before I took on this role of a lifetime. I miss hanging out and not feeling guilty the whole time because my kid is with a sitter, or because my spouse is at home dealing with her tedious bedtime routine alone. I miss going out and staying out too late every now and then, sleeping in, and having brunch to recover from our night of excitement.
I want my child to feel included, accepted, and embraced for the incredible little person she is, rather than accommodated for the challenges she has.
I know it can be awkward because you don’t know how best to interact with her. But the love, support, acceptance, and safe space that I have given to your child, I also want my child to have as she grows.